All right, where do I even begin? It has been a while sine my last blog update. I decided to make this into a few different post. That way I can give a better overview over the last month and a half. When I updated this page last, I was just finishing radiation and was waiting for the side effects to get worse. After which I was hoping to see recovery. Ending in a somewhat normal life again. Well, let me start at the beginning…
Waiting for things to get worse
While I going through radiation, I was often told the side effects would get much worse for the first week or two. When I finished we were all praying that it wouldn’t get too, too bad. All those prayers were definitely answered. Instead of getting worse, I was steadily getting better.
I missed the whole worst part of what radiation brings with it and went straight into healing it seems. However, in those moments, I didn’t realize how well I actually was doing. I did realize that I was getting better but man, I had no clue just how rarely that ever happens. It just about never happens to get that much better that fast; but more to that later…
The most obvious side effect I struggled with was the skin burn. It started getting worse and worse throughout the last 2 weeks of radiation. I was constantly putting Glaxal Base lotion on it. As well as doing saline soaks as often as I could, since those were the only things I was allowed to do.
Obviously, I was wearing scarves anywhere I went. First of all to protect the skin from any further exposure, to either the elements or UV rays. Especially sitting in the car I made sure I had everything covered to ensure no sunlight was hitting my affected area. Secondly, I wore the scarves so others wouldn’t have to see how bad it actually looked. At one point I picked a scarf that was probably not the right material to have anywhere near my neck. It started sticking to my skin and I literally had to peel it off to remove the scarf. Needless to say that scarf took a vacation until things got better.
Skin
My medical team I told me I shouldn’t apply any creams, other than the Glaxal base, on my neck for at least 2 weeks. Well, I lasted 4 days. I was putting the cream on just about every half an hour, because it would soak up so fast. However, every time I did put it on, I almost screamed in pain. It was a terrible burning sensation that would just not let up for minutes. Sometimes I would sit in front of a big fan to try and have it take the pain away a little bit. Most times that didn’t work either though.
The saline soaks also didn’t do too much. When I first put them on, they would feel amazing. It would cool and just make everything feel so much better, That would only last until I went to take them off though I wasn’t supposed wear them longer than 15-20 minutes. Often I stretched it to an hour. When I took them off they would again have to be peeled off. When I touched them, they were radiating heat.
Throughout the last week of radiation I was getting worried what I could do over night. I was often waking up in pain and nothing was really helping, until I got the Hydrogel impregnated sponges. Four days after radiation was done, I ran out of sponges and didn’t know what to do over night.
Alternative Medicine help
My Aunts mom gave me a cream/greasy lotion she makes herself. It is made out of Calendula flowers. She already gave it to me while I was going through radiation. Since I was trying to follow all the doctors rules, I didn’t use it at all until that 4th day after I finished. I started during the day when the pain from the Glaxal base got so bad that I could barely take it. I decided to give this thing a try. When I first put it on, it burned so much. Almost as bad as the Glaxal, but it subsided much faster. That alone was the first plus in my books.
I went most of that day without having to apply anything else to my neck. Since it’s such a greasy composition it just covered it and soaked in very slowly. I didn’t have to reapply it again until I went to bed that day. Over night I felt so much better. No more stinky sponges on my neck and everything stayed lotioned up.
After that I just decided to leave it at this lotion and not to use anything else. I only had to apply it twice a day and the results where simply amazing. I know some of these pictures aren’t easy to look at.
Appetite and Weight
At the end of radiation the total weight loss for was somewhere around 17lbs or around 8kgs. My dieticians were always very supportive about the weight loss. They encouraged me to try more of this or more of that. They also reminded me of how important it is to keep up my the intake to ensure I don’t lose more after the radiation was done.
That was what I tried to do. I would eat anything that could go down, packing as many calories into what I was eating as possible into it. Often times that included rice with butter and sour cream or Starbucks coffee with extra whipped cream. Some days were better than others. The nausea also came and went.
I often throw up throughout the day, especially in the mornings. This leads to needing either Maxeran, Gravol and a heating bag on my stomach or a combination of the three, before I can eat and keep anything down. I thought I was doing so poorly that they wouldn’t be happy with me when I went back to meet with the dieticians. Mostly with the fact that I hadn’t started gaining weight back yet. Boy was I wrong about their expectations.
Radiation Support Group
About 3 weeks after I finished radiation I was asked to come to a post radiation group meeting. This included other patients who recently finished radiation to the head and neck area. The longest was a patient 5 months post finishing of treatments. The dieticians, a speech language pathologist, a nurse practitioner, physiologists and a few other health care providers also attended.
The group is meant for health care providers to get a sense of how patient have been doing since finishing radiation At the same time it is for patients to share their experiences and what has been helpful in soothing some side effects. As we sat in there listening to other patients sharing their struggles, Jeff and I could just share meaningful looks with each other. We simply have to marvel at how much God has done for me already that we weren’t even aware of.
When I compared myself to all the other patients and their stories, my well being was closest to the man who had been done for over 5 months. Others who were done around 3 months, still had feeding tubes, issues getting enough fluid in, or having trouble with energy. Most requiring naps throughout the day and long night sleeps.
A man sitting next to me actually finished his treatments the exact same day I had. He was still losing weight and having many issues his saliva. It was so thick, he had to spit into a cup the entire time.
Marvel over marvel
I almost felt bad sharing how well I was doing. Not only was I maintaining my weight, I also was eating just about everything. I still stay away from very dry things like bread. However, I don’t need to supplement with anything like Ensure or Boost. I tried those during radiation and didn’t like them at all, so I am very happy I an not depending on them.
My taste buds have started coming back and I am able to taste most things again. Other people still said they had issues with that months after treatment completion. I mean I was the youngest person there by probably 20 years, but I don’t believe that age alone had such an amazing effect on my recovery. I am just amazed at God’s mercy on my life so far.
Energy
In the last 3 weeks of treatments, I wasn’t driving anywhere alone anymore. Jeff or one of my family members always drove, no matter where I needed to go. I just felt tired most days and couldn’t concentrate properly anymore. We figured it would be safer for everyone if I just didn’t drive. I believe I drove for the first time about 2 weeks after finishing treatment. It was a very short drive but still it was a start.
In the last week of treatment I made Jeff go on a walk with me. I think we might have only walked 1 km before I wasn’t sure I was going to make it home at all. I seriously thought I was going to pass out on the sidewalk. After just making it home, I basically went straight for the couch and straight from there to bed. I had no energy to do anything anymore. That has also gotten much better.
My family was coming to help with cleaning the house during treatments as well as after. I am now able to do more and more, so they don’t have to help with as much anymore. I am so grateful to have the support from family and friends. It is just overwhelming.
Another way I know my energy is getting better is social get-togethers. The first little while after I finished I could maybe last an hour or 2 but not more than that. I felt totally drained and my concentration was absolutely gone. After a couple weeks we had something going on and I actually managed to stay until the very end and still feel fine. I am just so amazed and the difference I see in myself from even a few weeks ago.
Swallowing
One issue which got a little worse after the end of treatment was the amount of pain. Especially the pain I feel while I am eating and swallowing. So to make sure I am not missing too much food because it hurts too much to swallow, I am using Dr. Akabutu’s mouthwash before every meal. As previously mentioned, the mouthwash is something a doctor from the Cross Cancer Institute invented. It is basically a mixture of different medications to help with those symptoms of treatments.
However, Dr. J. didn’t want me to use it longer than 4 weeks because they have steroids in them as well. That became a bit of a question as to what we could do instead. Especially because I could hardly eat without the mouthwash. I was given a pure Lidocaine mixture that I can gargle with and then swallow. It numbs the throat and makes it so much easier to eat. It definitely has been amazing.
Future Planning
The week before I finished treatments, Dr. J., Jeff and I sat down and discussed what the next while would look like appointments wise. I mentioned to them I planned to go to Disney World. Dr. J. made a note in my file that he wanted to see me before I left.
He wanted me to do some blood work to determine the cancer markers. Plus, check how everything else was going. Then we would discuss where we go from there. The results of that meeting are coming up in my next blog post…
